enabling brain injury survivors to help each other

Luke’s Story

I was waiting for my morning train to go to work on a Tuesday morning when my body shut down, causing me to fall onto the concrete platform.When my head connected with the platform it fractured the back of my skull, causing my brain to bounce around within my skull and bleed.

Where initial treatment took place:

I was taken to King’s College Hospital in Denmark Hill, LONDON.I was discharged from there on 4 December, so I was only in hospital for just under two weeks.

Were any specific procedures undertaken?

I had several CT scans while in the hospital but they didn’t operate on anything.They thought it best to leave my brain so that it could heal on its own.There was some bleeding of the brain, but not enough to warrant an operation.The swelling and the blood surrounding the brain eventually went away.

How did the survivor (or you) feel at this point?

I don’t remember the majority of my stay at the hospital.According to my wife, I was quite confused most of the time while I was in hospital.When they would ask the standard questions of, “What year is it? Where are you?” I started off in 1989 and was in Florence.I moved to South Africa for one of the questions (my wife is from South Africa).After approximately a week it seems that I arrived at the correct year and London.

Describe the initial rehabilitation:

When I arrived home I found it very difficult.I had a constant, and extreme, headache from the pressure of the blood and swelling of my brain.I was unable to sleep and found it very difficult to move my head without major pain.This went on for about five weeks after being discharged.

I wasn’t eating as I had no appetite, I was only drinking water.I had to go back to A&E about seven days after discharge as my Sodium levels had dropped dramatically.

An Neuro OT came to the house three times over three weeks to assess me.This was a standard NHS prodecure.I also had a Neuro Physio visit.

I didn’t venture out of our flat and I generally had no contact with the outside world for about four weeks (emails, phone calls, etc) except when my wife called me.It was difficult for me to communicate or focus on anything.

I did try and get out of the flat to go for a walk around the block, that happened about twice per week and it was only a five minute walk.Physically I was fine, it was just the mental side of things that made it difficult for me.

Describe the ongoing rehabilitation:

I went back to work on 2 January 2017.It was extremely difficult for me, as I was still struggling with putting together sentences, memory, brain fatigue (I was getting daily headaches), and overwhelmed by the ‘data input’ of the outside world.I took two weeks off work mid-February and went back to work for only three days per week.The two weeks off did help me with my recovery.I probably did go back to work too soon (back in January) but it was my decision and not pressure from anyone else.I just wanted to get back to ‘normal’ and I thought that getting back into the work routine would help.

A friend of mine, who works for the NHS, first told me about The Wolfson in February and I was first in contact with them in about May 2017.She had also put me in contact with a private consultant, who had worked at The Wolfson many years ago.She is a Speech & Language Therapist but is more of a guidance counselor for me.I then took on two other private consultants – Neuro OT and Speech & Language.I started seeing the both of them around June 2017.

Initally, the NHS told me that I would make a full recovery.It was about May/June 2017 that I realised that their version of a ‘full recovery’ was slightly different to mine.I was expecting to go back to the way I was pre-accident.Many things were getting better for me (medically) and I am extremely lucky and grateful for my recovery.I previously worked in the wine trade, so I used my sense of smell and taste a great deal.At first, I didn’t realise that I had lost my sense of smell/taste, as I was dealing with trying to figure out so many other things and when I did realise I figured that those senses would return (‘full recovery’) as other parts of my brain functioning were returning.I have lost 100% of my sense of smell and therefore I am tasting at about 20% (that number I am pulling out of thin air).When I realised all of this, I had to make the decision to resign from my job, as I knew that I was completely useless within the wine industry, which happened at the end of August 2017.

I did my testing period with The Wolfson in October/November 2017 and started with the Vocational Rehabilitation Program at the end of February 2018.It has been a great help and support for me, giving me guidance, direction and the motivation to search for another career.

After leaving my wine job, I had about one month off and then started in a local chocolate/coffee shop in my neighborhood.It was a very quiet little shop and it was a great first step to getting me into the working world.It helped me with the basic things – multi-tasking, small talk and social interaction, short-term memory (remembering people’s coffee orders), basic arithmetic (working out the amount of change to give a customer).I worked there from October 2017 to April 2018.I left there as I felt that I had plateaued in my ‘recovery’ there, so I then took up a part time job in a café in Belgravia.I wanted a place where it was constantly busy, with many customers, several work colleagues, etc so that I could see how my brain coped with the amount of ‘data input’.I have now worked there for four weeks and it has been working out well for me and helping me in building my confidence that I am able to cope with busy environments.I plan on working there for another 4-6 weeks and I have started looking for a full-time career job.

How does the survivor (or you) feel about the recovery progress?

It is all very slow and boring.I am tired of it all and I want to get back to ‘normal’.I realise that I now have to figure out what the new ‘normal’ is and work within those parameters.I feel like my life is currently in limbo and not going anywhere.I am feeling/hoping that this will change when I am back working in a full-time ‘office job’.

My private medical consultants and The Wolfson have been fantastic and have helped me greatly.

Points you believe would be worthwhile sharing with other survivors:

Hmmmmm.This is a hard one.Not sure, as everyone is so individual.

I guess I’ll just go by my philosophies.

Take one day at a time.

Baby steps – Set yourself small and achievable goals so that you don’t set yourself up for failure as that will just ruin your confidence even more.

Give an example of ‘helpful help’:

Medical staff being honest with me.I have felt that it has helped me to take control and assess the situation and plan a solution/way forward, therefore not dwelling on a unfortunate situation.

The love, support and understanding from my wife.

Give an example of ‘unhelpful help’:

I get annoyed (internally) when people compare themselves to my situation (eg. If I am telling someone that I have certain memory problems and they say “oh yeah, I have that ALL the time!I can never remember ….”.I am not trying to compare myself to others, I am just comparing my brain functioning to the way my brain operated pre-accident)

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